Family presses on for cure, despite son's grim diagnosis

By Sarah Bruyn JonesStaff Writer

Thursday

Sep 27, 2007 at 5:48 PMSep 27, 2007 at 6:55 PM

Charles Logan Patrick will turn 1 year old on Oct. 11, but he still can’t roll over.He can’t hold up his head. He doesn’t crawl, or even move his legs.What Logan, as he is known to friends and family, can do is flash a smile, wave to a new face and give his mom a high five.“He is still a happy baby,” said Jennifer Patrick, Logan’s mother. “He smiles, talks and is still there mentally. He watches everybody and knows what’s going on.”Logan has a disease called spinal muscular atrophy. While SMA is relatively rare, it is the No. 1 genetic killer of children under the age of two. One in 6,000 babies is born with SMA. There is no known cure.The disease destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control and even swallowing. It is degenerative, meaning that children with SMA may have control of their muscles at one point, but lose that control as they age and the neurons that help control muscle movement die.Logan used to kick his legs. Now they only move when his parents move them for him. He once sucked a bottle, but when the muscles in his mouth stopped working, they started feeding him through a feeding tube.“When he was born, he was the strongest he will ever be,” said Jason Patrick, Logan’s father and an officer with the Tuscaloosa Police Department. An person with SMA has a missing or mutated gene that produces a protein in the body. This protein deficiency has its most severe effect on motor neurons, the nerve cells in the spinal cord that send out nerve fibers to muscles throughout the body. The protein is crucial to the survival and health of motor neurons. Without the protein, nerve cells atrophy, shrink and eventually die. One out of every 40 people carries the recessive gene that causes SMA. For a child to get it, both parents must be carriers. Even then, the child of two carriers has just one chance in four of developing SMA. Neither Jason nor Jennifer Patrick knew they were carriers. They hadn’t even heard of SMA until Logan was diagnosed at 5 months. At first the Patricks thought Logan was just slow to develop. At his four-month checkup, they asked their pediatrician why Logan wasn’t reaching the milestones that most babies reach at that age. They were also fiercely defensive of their only child, telling family members not to jump to conclusions. Jason Patrick even took to jokingly calling him “lazy baby” because Logan would just lie there without moving.Now the Patricks are actively involved in trying to help find a cure that will most likely kill Logan before he gets to preschool.They’ve already sold more than 500 rubber bracelets to support research. And they are getting ready for a two-mile fundraising walk on Saturday around a park pond in Helena.Days before anyone has taken even one step, $20,000 has already been raised, Jennifer Patrick said.The walk is being sponsored by the local chapter of the international Families of SMA, an advocacy group for education, research and family support. Jennifer Patrick, who works for the University of Alabama purchasing department, has gotten several items signed by head football coach Nick Saban for the silent auction after the walk. Jason Patrick is realistic about his son’s future. He knows the family probably won’t have a chance to celebrate many more birthdays and he is frank about the way Logan will probably die. Respiratory failure is particularly likely. As the muscles around Logan’s lungs atrophy, his breathing will be impaired. Logan is already showing the signs. Every day, his parents suction out the saliva and mucus that make him choke. Lately, they’ve noticed they have had to use the suction machine more frequently.“Six months from now, we may not have this child, so we try and do things that make him happy,” Jason Patrick said.Framed photographs of Logan hang on the walls, sit on tables and are displayed on the mantel over the fireplace. Toys are everywhere.The toys are not solely for fun. They’re also therapeutic. Anything that keeps Logan using his muscles helps keep him stronger.The reality of SMA has forced Jason and Jennifer Patrick to discuss things they didn’t imagine having to talk about a year ago. Eventually, they know they will have to decide whether to let surgeons perform a tracheotomy on Logan to open his airways.Logan already uses a BiPAP, or bilevel positive airway pressure, to help him breath at night. The BiPAP is a nasal mask that inflates the lungs and provides a higher volume of air into them. “Really, his nursery looks more like an intensive care unit than a bedroom, with all the devices we have for him,” said Jennifer Patrick.To help deal with the tough decisions and the stresses of a child with SMA, the Patricks said they have relied on their faith and friends at First Wesleyan Church as well as their family. They have spoken to other parents of children with SMA around the country, which helps answer their questions about care and quality of life.For now, they are planning Logan’s first birthday, a big bash at First Wesleyan. A moon bounce with a slide will be part of the festivities. “I think you’ll even get to go down the slide,” Jennifer Patrick said to Logan, as he grabs onto her finger and babbles happily.